What makes a clinical study meaningful? For PCORnet, the National Patient-Centered Clinical Research Network, the answer is simple: meaningful research reflects the voice of communities, addressing questions and concerns that are relevant to the real world. PaTH, a PCORnet Clinical Data Research Network (CDRN) funded by PCORI, is making these voices more accessible with the creation of the MyPaTH Story Booth, an audio archive designed to let patients, caregivers, and communities make and share audio recordings of their own health stories and perspectives with researchers. Through the MyPaTH Story Booth, PaTH hopes to generate a better understanding of different stakeholder perspectives to steer clinical studies in the right direction and answer research questions that truly matter to patients.

“The MyPaTH Story Booth was created to connect researchers, people, and clinicians and provide them with insights into what research questions need answers, where gaps are in our current healthcare system, and how we can subsequently make improvements,” said Kathleen McTigue, MD, MPH, MS, PaTH Principal Investigator. “It’s a tool that puts people in the driver’s seat of their own health outcomes and furthers the vital linkage between patient, clinician, and researcher.”

The Story Booth’s users agree, which is one reason why the tool was expanded for the use of researchers outside of the PaTH network. Just last month, an institutional review board (IRB) protocol was approved that now allows future Story Booth uploads to be shared among health researchers, regardless of whether they are affiliated with PaTH.

Those who are interested in participating in the MyPaTH Story Booth simply have to visit the PaTH website and schedule an appointment to share their story. Most people choose to set up a phone interview, but patients who are in or near the Pittsburgh area (where the MyPaTH Audio Booth is based) have the opportunity to share their story in person. Once their interview is finished, users have the option to approve or re-record their story. Once approved, each story is reviewed by MyPaTH staff to ensure that identifying features, such as personal or institutional names, are obscured with an audio tone. Then the full interview is uploaded to the archive and made accessible to researchers, clinicians, and other fellow patients.

Trailblazing an era of deeper relationships with the research community

The Story Booth is not only a platform for people to share their experiences; it also serves as a foundational basis for deeper relationships with the research community. Following a Story Booth submission, users may opt to be informed about research opportunities related to their story or to receive education on how they can become more involved as a patient partner in research. For example, if a caregiver shared a story about his or her experience with dementia, PaTH offers to facilitate an introduction to PCORnet’s dementia-focused partner network. Likewise, the participant would be informed if a researcher approaches the MyPaTH team hoping to engage partners with real-world experience with dementia.

Patients are positively responding to these opportunities. In fact, data from the first 105 participants who used the Story Booth showed that 58 percent of participants were interested in learning about how to become a patient partner in research that is related to their story.

Jim Uhrig is one early Story Booth user connecting with the research community. After being diagnosed with an incurable disease in 2008 and told that patients like him live an average of just three years, Uhrig received a double lung transplant in 2009, and, since then, has lived a relatively healthy life. For the last eight years, his experience has inspired a new mission within him: to improve organ donor awareness and inspire others through his unique story. As part of this mission, Jim serves on PaTH’s Steering Committee, acts as a patient partner with the Idiopathic Pulmonary Fibrosis cohort, and has even written a memoir titled Partners 4 Life.

“It wasn’t long after my diagnosis that I realized the patient voice is often overlooked in clinical research,” said Uhrig. “PaTH is doing a great thing. With tools like the MyPath Story Booth, patients are not only able to share their perspectives through their own words, but they also have the opportunity to connect with one another to share stories, provide support, and form a tight-knit community of like-minded peers.”

Uhrig and other patient partners are not just users of the Story Booth; they actively participated in its development. From suggesting that caregivers’ perspectives were just as important as patients’ to proposing that users should have a chance to edit and review their stories before publication, community members like Jim provided valuable input in the creation of this tool.

Interested in learning more about the strategy behind PaTH and the MyPaTH Story Booth? Listen to a recording of the most recent PCORnet Best Practice Sharing Session webinar that highlighted the Story Booth! You can also ask follow up questions on the PCORnet Commons. Want to experience the MyPaTH Story Booth in action? You can do that by listening to these real-world user stories here.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available atwww.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available atwww.pcornet.org.

Erin Gilroy, BS, was a Senior Research Coordinator in the Center for Clinical Epidemiology and Biostatistics at the University of Pennsylvania’s Perelman School of Medicine and Study Project Manager for the PCORnet DINE-CD Demonstration Study which began in March 2016. Gilroy is now attending nursing school.

Most of us know the popular saying, “Don’t reinvent the wheel.” When you are an experienced researcher, you live by this statement. When it’s time to develop a new study, you pull from your previously-used tried and true techniques; you dig out those dusty patient instructions from your last trial and see how you can tweak them for your new trial. It’s all in the name of not reinventing the wheel. What do you do if you are new to research, or if you are doing a type of trial that is foreign to you? Where do you turn?

When it came time to develop our diet intervention trial called DINE-CD, (Comparative Effectiveness of Specific Carbohydrate and Mediterranean Diets to Induce Remission in Patients with Crohn’s Disease) a PCORI-funded PCORnet Demonstration Study, PCORnet infrastructure helped us navigate in exactly this type of situation.

A key pillar of PCORnet is to have patient stakeholders assist in each step of the project. This foundation of inclusion has also been helpful for us throughout our work. With PCORnet, my DINE-CD research team was exposed to other researchers who have done similar projects with whom we could collaborate. Our team developed a working relationship with the ImproveCareNow PPRN – an organization that is also doing diet trials with Crohn’s disease patients. We have helped each other through discussion of study techniques and protocol design and review of patient-directed instructional materials. We also share a Data and Safety Monitoring Board that oversees our trial.

Having never studied the Specific Carbohydrate Diet before, we learned tons of information about how to educate our research participants about the diet from the ImproveCareNow team. An example of this is through the use of informational handouts that are easy to read and aesthetically pleasing, with information laid out in a manner that quickly shows the participants foods that are permitted and not permitted on the diet.

Another collaboration that has helped us is with the PCORnet PPRN ArthritisPower (AR-PoWER), the Arthritis Partnership with Comparative Effectiveness Researchers. One of the common comorbidities for Crohn’s disease patients is arthritis. Through our collaboration with AR-PoWER and the Global Healthy Living Foundation, we obtained data collection tools for arthritis data that have proven successful in previous research studies. Had we not been engaged in this collaboration with AR-POWER, we may have missed this opportunity to study the joint symptoms of Crohn’s disease or would have been forced to inefficiently, and possibly ineffectively, develop our own tools to collect arthritis data.

Not only do we not have to reinvent the wheel when it comes to our patient instructions and data collection tools, we also don’t have to reinvent the wheel when it comes to our recruitment efforts. The Crohn’s and Colitis Foundation (CCFA Partners PPRN) is a network of thousands of potential participants from which we can recruit Crohn’s patients. Having this pool of Crohn’s patients ready and willing to participate in research is invaluable to this project.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available atwww.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available atwww.pcornet.org.

As the networks and studies within the National Patient-Centered Clinical Research Network, PCORnet, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), continue to grow and mature, the impact of PCORnet itself is also growing. This growth was evident at AcademyHealth’s Annual Research Meeting (ARM) held June 25-27th in New Orleans where PCORnet leaders from around the nation presented posters, participated in panel discussions and highlighted their work in innovation workshops. For example:

The work of three PCORnet Patient Powered Research Networks (PPRNs) were highlighted in the session “Effective Engagement in Rare Disease Research: What Does That Mean and How Do You Do It?”Megan O’Boyle, principal investigator of the Phelan-McDermid Syndrome Foundation, Elizabeth Cope, former principal investigator of NephCure, and Ann Lucas, principal investigator of DuchenneConnect all led this session which confronted critical gaps in methods for engaging patients in rare disease research using the three patient-powered research networks as case studies.

Researchers from PCORnet’s Clinical Data Research Networks (CDRNs) participated in the session “Ensuring the Quality of Big Data for Health Services Research” which explored the PCORnet Common Data Model and the impact of data generation and management on data quality in order to produce valid and precise estimates for research. Iben Ricket, a senior data scientist for REACHnet, Lisa Schilling, the co-principal investigator for pSCANNER, and Bradley Hammill, a researcher with the Duke Clinical Research Institute working on the ADAPTABLE Study, all participated in this session in which PCORnet was discussed as a use-case for working with big data and PCORnet demonstration studies were highlighted.

Mary Whooley a site principal investigator for pSCANNER from the University of California, San Francisco, participated in the session “From Data to Implementation and Back Again: Lessons from VA’s Emerging Learning Health System” which explored a range of Veteran’s Administration initiatives supporting development of a robust learning health system within the nation’s largest integrated health system. Whooley discussed PCORnet and the Observational Medical Outcomes Partnership (OMOP) Common Data Model.

The networking opportunities at AcademyHealth’s Annual Research Meeting offered PCORnet partners the opportunity to highlight their important work to new audiences. OneFlorida, a PCORnet CDRN, as well as PCORI itself, sponsored exhibit booths. OneFlorida included a running presentation at their booth educating attendees about the work of this network. REACHnet, a CDRN based in Louisiana, hosted many sessions at ARM. Finally, PCORnet held an invite-only breakfast to better educate researchers on how PCORnet works and to encourage engagement.

A number of PCORnet researchers presented posters at the conference, including:

You can follow the discussions that took place at ARM on twitter using the hashtag #ARM17.

If you are speaking or presenting at an upcoming conference or event, please keep the PCORnet communications team in the loop! Contact Jennifer Cook at jennifer.cook@duke.edu.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Leaders from REACHnet, a PCORI-funded PCORnet CDRN based in Louisiana, took advantage of the HealthAcademy’s Annual Research Meeting (ARM) New Orleans location this year by participating in several panel discussions and presentations, including:

A presentation during a session on Patient Voices in Research and Quality Improvement: “Engaging Stakeholders to Develop a Patient-Centered Research Agenda: Methods and Lessons Learned from the Research Action for Health Network (REACHnet).” Sarah Haynes, a former research coordinator with REACHnet, described how and why REACHnet developed a process for engaging multi-stakeholder advisory groups in the development of patient-centered research agendas for weight management and diabetes.

Ava Zebrick, a patient partner and consultant with REACHnet, participated in the panel discussion: “The ACA and PCOR Trust Fund Have Advanced Patient and Family Involvement in Research. What is Left to Do?” Zebrick recounted her journey after bariatric surgery as she joined research efforts at REACHnet, earned a master’s degree in health management and found herself becoming “exponentially involved” as a patient advocate in obesity research and policy at the state and federal level.

REACHnet’s Director of Engagement Rebekah Angove led an innovation workshop: “Preparing Early Career Health Professionals to Meaningfully Engage Patients in Research.” Recognizing that providers play an essential role connecting patients to research but have little to no formal training in patient-centered research, REACHnet developed of a curriculum for medical students to learn some of the fundamental principles of engagement. After iteration and testing, this curriculum will be available online in August.

Lindsay Hendryx, Program Manager for Health Services Research from REACHnet led an innovation workshop on The REACHnet Pragmatic Trial App Suite. In this session, Hendrix and colleagues demonstrated a tablet-based research recruitment tool currently in implementation in multiple health systems and Federally Qualified Health Centers. By making tablets available in clinics, patients are able to use the proprietary app to learn more about research opportunities, take customer service surveys, and choose to be contacted about study opportunities.

If you are speaking or presenting at an upcoming conference or event, please keep the PCORnet communications team in the loop! Contact Jennifer Cook at jennifer.cook@duke.edu.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

What if the National Patient-Centered Clinical Research Network (PCORnet) teamed up with another robust distributed research network to combine powers in the pursuit of clinical research? Could researchers use the linkage to enhance complete data for surveillance and glean insights that allow people to make better informed, evidence-based decisions on important health-related matters? A new collaboration seeks to answer these questions.

Two pilot projects funded through a public-private partnership with the Patient-Centered Outcomes Research Institute (PCORI), the U.S. Food and Drug Administration (FDA), and the Regan-Udall Foundation (participating in an advisory capacity) are demonstrating the value of data linkage between PCORnet—one of PCORI’s most innovative initiatives to revolutionize clinical research—and other disparate distributed networks, such as the FDA’s Sentinel program. While PCORnet predominantly contains Electronic Health Record (EHR) clinical data, Sentinel uses claims data to monitor the safety of regulated medical products, including drugs, vaccines, biologics, and medical devices. Both EHR and claims data offer valuable insights that, when combined, allow for a more complete picture of overall health. Altogether, this collaboration seeks to advance patient-centered research in regulatory science and enhance patient-clinician decision-making.

“We are delighted to be teaming up with the FDA, the Sentinel Initiative, and Reagan-Udall Foundation for this exciting and promising initiative that speaks to the future of patient-centered research and PCORnet’s value with researchers and other stakeholders,” said Joe Selby, M.D., M.P.H., executive director of PCORI. “Collaborations like this will be essential if we’re going to transform traditional clinical research, conduct definitive studies, and put people and other healthcare stakeholders in the driver’s seat to enable better informed healthcare decisions.”

The two pilot projects began in November 2016 and involve researchers in partnership with PCORnet’s OneFlorida Clinical Data Research Network and Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN).

The first project focuses on leveraging EHR and claims data to reduce transmission rates of the mosquito-borne Zika virus. While most people infected with the Zika virus will only experience mild or even nonexistent symptoms, women who are infected with Zika during pregnancy are at risk of having babies that suffer from a birth defect of the brain called microcephaly and other severe brain and birth defects. This project is working to develop a strategy for tracking the number of babies born with microcephaly within OneFlorida’s Clinical Data Research Network. Ultimately, the project team will categorize database information on infants born with microcephaly and work with the Sentinel team to enhance surveillance of congenital Zika syndrome.

CAPriCORN Project: Initiatives to Monitor Exposure to Antimicrobials in PCORnet and Sentinel (DataMIME)

The second pilot project seeks to harmonize data on usage of antimicrobials, which include drugs such as antibiotics, antivirals and antifungals. Because most bacteria, viruses, and other microbes multiply rapidly, they can quickly evolve and develop resistance to antimicrobial drugs, making it challenging to treat and control the spread of infections from multi-drug resistant organisms. This project will use the PCORnet Common Data Model to develop an open source methodology that can help the Centers for Disease Control and Prevention (CDC) National Healthcare Safety Network, the FDA’s Sentinel program and local hospital administrations detect and analyze pathogen trends and understand how best to minimize antimicrobial resistance.

The FDA and PCORI are providing separate funding for both pilot projects, which are expected to conclude in autumn of 2018.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

May is National Arthritis Awareness Month, a time to raise awareness about the number one cause of disability in the country: arthritis. According to the Arthritis Foundation, more than 50 million adults have doctor-diagnosed arthritis, and by the year 2040, that number is expected to grow to more than 78 million. A Patient-Powered Research Network (PPRN) for the PCORI-funded National Patient-Centered Clinical Research Network (PCORnet), AR-PoWER is using its unique and engaging voice to communicate with audiences through witty social media posts and creative events to increase awareness about arthritis and get individuals and communities involved in the movement toward improving the lives of those living with arthritis.

Created by CreakyJoints, the online, nonprofit patient support community for arthritis patients, AR-PoWER is the first ever patient-led, patient-centered research registry for arthritis, bone, and inflammatory skin conditions. AR-PoWER is designed to provide patients with a collaborative online platform to help combat joint, bone, and skin diseases; however, this registry is taking its work a step further. From clever Facebook and Twitter posts to eccentric fashion shows, AR-PoWER is redefining what it means to effectively connect and engage with audiences. Its newest addition? The launch of an optimized, interactive app designed to help patients continuously stay connected within the arthritis community and stay up to date on arthritis research through features that allow them to track their symptoms, medications and medical history and even capture biosensor data to monitor well-being.

With thousands of loyal Twitter followers, CreakyJoints is clearly doing something right within the social media landscape, so we welcomed the opportunity to sit down with social media guru for CreakyJoints and AR-PoWER, Joe Coe, to discuss tips and tricks to help other PPRNs and CDRNs boost their social media presence.

“Knowing how to effectively communicate your organization’s message on social media is one of the most important tools to have in your online arsenal. The best way to reach your audience is to meet people where they are already at, and today, that’s social media,” said Coe. “Simply posting on Facebook or Twitter whenever you get the chance isn’t enough. You have to find a unified voice for your organization and use it to build trust with your audience. Remember to be creative and take risks, and most importantly, remain adaptable. The online sphere is constantly evolving; what works for you today may not work for you tomorrow.”

In 2017, 81 percent of the population in the U.S. reported owning a social networking profile. That means that for organizations looking to engage audiences, the ability to navigate social media with savvy is crucial. Coe further elaborated on how other PPRNs like AR-PoWER can build a strong social media presence, including the following tricks of the trade:

Social media is a visual medium—be sure to share visually stimulating images or graphics.

Stay up-to-date on trending hashtags other healthcare organizations are using to capture those audiences in your posts. Not sure what those are? Check out Symplur, a free platform that connects you to the daily top trending hashtags in healthcare.

Stay away from jargon and use language that is accessible.

Keep it short and sweet—communicate your message in two or three sentences.

Take risks! Clever or witty posts are excellent at engaging audiences.

Are you interested in learning more about how to effectively engage audiences through social media? Be sure to attend our Social Media Best Practice Sharing Session (BPSS) June 8, 2017 at 11:00 am EDT designed to help PCORnet’s Partner Networks effectively use social media to elevate their profile and boost audience engagement.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

At the center of the National Patient-Centered Clinical Research Network (PCORnet), PCORI’s most ambitious initiative to date, lies the PCORnet Coordinating Center, a hard-working engine that combines three prominent research organizations, Duke Clinical Research Institute, Genetic Alliance, and Harvard Pilgrim Health Care Institute, to effectively manage the entire Network’s data and engagement activities. The Coordinating Center takes on everything from coordinating PCORnet’s operational activities to supporting and collaborating with PCORnet’s vast Partner Networks, comprised of Clinical Data Research Networks (CDRNs) and Patient-Powered Research Networks (PPRNs), to help them pursue PCORnet’s goal of moving toward a continuous learning healthcare system. But how do they do it?

In this blog, we take a closer look at one component of the Coordinating Center, the PCORnet Distributed Research Network Operations Center (DRN OC). The DRN OC performs many activities to strengthen PCORnet’s data infrastructure, but today we will focus on its efforts to harmonize data across our Network.

“The tremendous effort undertaken on a quarterly basis by PCORnet’s DRN OC and PCORnet’s data contributing sites is an excellent example of the collaborative nature of this Network.” said Darcy Louzao, operation lead of the DRN OC. “It is a process that continues to strengthen PCORnet’s data for the conduct of more efficient, high quality research studies.”

To fully understand how the process works, let’s start with some background. PCORnet is a distributed research network, which means that the data it leverages is not centralized in one location; rather, it allows each institution to remain in control of its data to safeguard patient privacy. Data—such as date of birth, blood pressure, or diagnoses—are harmonized across multiple locations so that when a researcher asks a question, such as “How many patients have high blood pressure?” CDRNs can all answer the question in the same way. Maintaining a distributed research network requires substantial and ongoing effort. One healthcare system in the Midwest might chart a patient’s high blood pressure in an entirely different way than another system in the Northeast, which would lead to inaccurate research results without harmonization. What seems like an easy question can quickly become complicated. So how can you ask a research question to hundreds of institutions and get back meaningful, trustworthy results to improve clinical decision-making?

The answer starts with PCORnet’s more than 80 data contributing sites, which act as the data sources for PCORnet’s CDRNs. These data contributing sites standardize their data to the Common Data Model (CDM) so that it all maps to the same consistent format. By undertaking this step, the DRN OC creates a platform that enables much more rapid responses to research questions. In order to maximize the value and quality of PCORnet’s data to researchers, the DRN OC then collaborates with each data contributing site to curate the data via quarterly reports that offer a comprehensive look at trends and ensure each data contributing site is correctly standardizing their data to the CDM.

The program we use to curate our data generates nearly 10,000 output tables every quarter. These tables consist of raw data that document patient encounters (such as electronic health records, claims, and administrative data) from each data contributing site. A program developed by the DRN OC then converts the information populating these tables into unique reports for each network that include summary tables and trend charts. This report is useful for both the data contributing site and the DRN OC to review to identify opportunities for continual quality improvements. For example, a trend chart from this report that illustrates data longitudinally and can easily identify outliers, which may indicate an error in how data were standardized to the CDM. Thus, in addition to ensuring PCORnet researchers have access to quality data, the DRN OC is helping our data contributing sites better understand and learn from their own data.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

When Heather Siefers visits her doctor to discuss her Multiple Sclerosis (MS), her doctor will tell her about the data from her lab tests and measures such as her liver function, blood pressure and weight. However, Siefers asks: shouldn’t data on quality of life indicators be captured alongside clinical data? She is also interested in capturing data on how long she has slept (or not slept) and how often she experienced numbness in her legs or memory fog.

This critical question about the types of data most important to patients as well as other important questions were explored in-depth when Siefers, a patient representative on PCORnet’s Data Committee, joined other patients and researchers last week at Health Datapalooza, an event held in Washington, D.C. that brings together a diverse audience of over 1,600 people from the public and private sectors to learn how health and health care can be improved by harnessing the power of data.

The National-Patient Centered Clinical Research Network (PCORnet), a PCORI initiative committed to furthering people-centered research and driving meaningful patient outcomes, hosted a panel discussion at the conference: “PCORnet, a PCORI Initiative: Integrating the Patient’s Voice in Data Network Development.” This session featured:

Uhrig discussed the patient role in creating the My Path Story Booth Project, a project modeled off of NPR’s StoryCorps, which allows patients and caregivers to record a conversation to share with researchers so they can better understand peoples’ experiences with health and illness.He also discussed patient involvement with PATH’s Network Protocol Review Committee, which facilitates a single Institutional Review Board (IRB) process for patient-centered research involving multiple health systems. An IRB is a type of committee used in research that formally approves, monitors, and reviews biomedical and behavioral research and assures that the rights and welfare of participants in studies are protected.

This committee includes a patient representative and investigator from each of the PaTH institutions. Patients and investigators discuss how research norms differ across institutions and help to promote learning by IRB staff at participating sites as well as suggest protocol improvements.

Raynor discussed the role of the CRGs in developing a patient-centered data infrastructure for PCORnet. The Health Disparities CRG focuses data infrastructure development on elements in the PCORnet Common Data Model (CDM) that pertain to social determinants of health, including ethnicity and race, and works to propose additional elements to the CDM that would facilitate research on safety net and vulnerable populations. Patients are involved at every level of decision-making for this CRG.

Siefers spoke about her role on the PCORnet Data Committee, which oversees PCORnet’s data network and advances informatics and research data innovations that support PCORnet’s goals. Although professionally she has experience collecting and analyzing data as a microbiologist, she came to her role on the PCORnet Data Committee with no experience coding data. After an initial learning curve of feeling like she did not understand her role, Siefers now recognizes that her contribution is not in the design of a data system but making sure the patient “voice” is incorporated into the data system design and that it supports the PCORI mission. Posing questions about the importance of quality of life data is one example of why the patient voice is crucial throughout PCORnet governance.

Lesley Curtis served as a moderator, posing and fielding questions for panelists. Curtis and other PCORnet leaders also spent time at Health Datapalooza meeting with government and industry representatives at a breakfast session which highlighted how PCORnet and its Front Door can help advance patient-centered research.

The panel discussion and networking opportunities at Health Datapalooza offered PCORnet the opportunity to highlight the important role of patients throughout the research process and to further its mission to enable people to make informed healthcare decisions by efficiently conducting clinical research relevant to their needs.

You can follow the discussions at Health Datapalooza on twitter using the hashtag #hdpalooza.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

Rainu Kaushal, MD, MPH, is the chair of the Department of Healthcare Policy and Research, executive director of the Center for Healthcare Informatics and Policy (CHiP), executive director of the Health Information Technology Evaluation Collaborative (HITEC), and the Nanette Laitman Distinguished Professor of Healthcare Policy and Research at Weill Cornell Medicine. She is the principal investigator of the New York City Clinical Data Research Network (NYC-CDRN), the Health Policy, Health System, and Public Health Collaborative Research Group, and a PCORnet Demonstration Study: “Identifying and Predicting Patients with Preventable High Utilization.”

Alex Low is the Project Manager of the NYC-CDRN.

The Patient-Centered Outcomes Research Institute (PCORI) funds Demonstration Studies to prove the capacity of its most ambitious endeavor, the National Patient-Centered Research Network, PCORnet, while answering critical research questions. Demonstration Studies fall into one of four initiatives: Interventional Studies, Obesity Observational Studies, Patient-Powered Research Network (PPRN) Studies, and Health Systems Studies. Health Systems Studies test PCORnet’s ability to engage health systems leaders and clinicians across Clinical Data Research Networks (CDRNs); to do focused and agile research that leverages the Common Data Model (CDM) and new health system data; and to do analyses rapidly and iteratively with systems leaders to facilitate their development of learning healthcare systems. Learning healthcare systems, as defined by the Institute of Medicine (IOM), are designed to emphasize a collaborative approach that shares data and insights across boundaries to drive better, more efficient medical practice and patient care. This guest blog examines many of the activities and key questions that are most important to the health system leaders working on these studies.

As strong advocates for efficient and effective working relationships between PCORnet and health systems, we see a significant benefit to both parties that should motivate them. PCORnet is dedicated to advancing learning health care systems and generating patient-centered, actionable evidence—making health systems a required partner for its activity. Meanwhile, health systems need high quality evidence as well as access to analysis-ready, comprehensive, longitudinal data sets to better characterize, compare, and understand their populations. Currently, more than 100 healthcare organizations participating in PCORnet allow for exploration of these opportunities.

PCORI and the National Academy of Medicine (NAM) have recognized the value of this symbiotic relationship, co-sponsoring several national meetings with leaders from health systems and PCORnet over the last few years to discuss the potential value of big data networks like PCORnet to answer questions of importance to health systems. Together with other principal investigators from PCORnet, we have taken a leading role in helping organize these meetings. The efforts started with two workshops in 2014 that were part of the Roundtable on Value and Science-Driven Health Care, and continued with two meetings in 2016 that were part of Accelerating Clinical Knowledge Generation and Use.

Themes and opportunities that emerged from those meetings included the importance of (a) timely dissemination of data; (b) key roles for health system leadership in PCORnet; (c) an integrated, national clinical data infrastructure; (d) linking health care delivery data to health plan data; and (e) establishing partnerships between research and clinical practice. Health system leaders helped to identify the topics where they could best leverage a data resource like PCORnet, their data requirements, potential extensions to the PCORnet CDM, and opportunities for engagement. They discussed the importance of embedding research into the delivery of care and then creating a feedback loop so health systems can rapidly adopt those insights—all important aspects of a learning healthcare system.

Some of the key research themes and opportunities emerging from these meetings and subsequent discussions have included:

Assessment of value in healthcare (including quality, safety, and utilization)

Collection of social determinants of health data

Assessment of ways to link PCORnet data to other data

Clearinghouse of health care delivery practices and outcomes

Dissemination science

PCORI has already put some of these themes into practice by funding health systems planning activities across PCORnet. During the six-month period, the CDRNs interviewed hundreds of health system leaders, clinicians, patients, and others from across the country to identify their priorities for using PCORnet and the research topics that would provide them with the most value. This process led to rich guidance that subsequently informed an initial set of four health system demonstration projects. We are leading one of those projects, which is focused on characterizing patients with preventable high utilization in New York City, Florida, and Chicago. In parallel, we are working with Elizabeth Shenkman, PhD, co-principal investigator for the PCORI-funded OneFlorida CDRN, to lead the PCORnet Health Systems, Health Policy, and Public Health Collaborative Research Group (CRG), which is bringing together researchers, health systems, patients and others to identify and develop fundable research proposals leveraging PCORnet and expanding the CDM.

These are important steps. The next challenge will be developing an ongoing framework for collaboration among health systems and CDRNs at the national level. To advance this framework, we continue to welcome input from all stakeholders on ways in which they can leverage PCORnet for health system projects, and especially welcome your participation in our CRG. Please reach out to Rainu Kaushal at rak2007@med.cornell.edu if you’re interested in joining. By leveraging PCORnet to integrate data capture for health care delivery and ongoing research, health systems can advance the concept of learning health systems, thereby driving research, operational, and policy agendas and improving healthcare delivery for patients on a wide scale.

In a recent video, Rainu Kaushal discusses the importance of how PCORnet provides robust, research-ready data for health system leaders to improve healthcare and delivery of care.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available atwww.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available atwww.pcornet.org.

PCORnet is an innovative initiative funded by the Patient-Centered Outcomes Research Institute (PCORI). Reference in this Web site to any specific commercial products, process, service, manufacturer, or company does not constitute its endorsement or recommendation by the Patient-Centered Outcomes Research Institute (PCORI). PCORI is not responsible for the contents of any "off-site" Web page referenced from this server.

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